After confusion as to who was now prescribing MTX, I am sure the rheumatologist said he was passing it to the GP as he was happy with my bloods, but who knows. I am now without MTX and had to contact the rheumatology nurse, I am quite happy missing a couple of weeks as I might get a few pain free, less exhausting days and more sleep at night!
I told the nurse I was struggling with my drop from 8mg to 7mg, I have a flare when I try it, so I wanted to go down by 0.5mg per month instead, her answer was I must go down by 0.5mg per two weeks if that was the case and she will notify the rheumatologist.
I was on 11mg pred when I was put on MTX I am now on 7.5mg after almost 7months and my physical and mental health has plummeted. The only time I felt well during that time was when I had covid (bar four days in bed) and therefore didn’t take MTX for 3 weeks.
Sorry about this rant I know there is nothing I can do and must just wait for this all to be over!
Written by
suelm
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Why is there nothing you can do? Get an appointment with your GP and clarify with them how much responsibility they are prepared to take for managing you. As long as they will continue to provide pred - then you exercise your rights as a patient and say NO to MTX. You have plenty of evidence that it is MTX that is making you feel so ill. And play the mental health card - they are beginning to recognise how significant that is.
I have nothing at all against MTX being tried - it does work very well for a small group of PMR patients and when it does, great. However - some 2/3 of even RA patients stop it either because the adverse effects are intolerable or because it doesn't work. There are no guarantees that MTX will get you off pred for PMR - even Prof Sarah Mackie who has been quite a proponent of its use agrees the picture is very mixed and there are a lot of patients who don't do well on it. She is undertaking a study - does it work or not. The sooner that reports, the better.
The primary commitment of healthcare providers is "First, do no harm" - making a patient's life downright unpleasant by forcing them to take a drug they don't tolerate hardly fits with that. What hospital are you under?
I am with the University Hospitals of Derby and Burton, Florence Nightingale Community Hospital. Everyone is extremely pleasant and I feel for them as the work load they are under is extreme. My GP’s surgery is under even more pressure because of the change in the computer system, same day emergency appointments and illness.
I feel embarrassed to contact anyone as my illness is not life threatening and as I am getting older I am not important in the grand scheme of things. I know it sounds pathetic but the stress I feel about contacting anyone compounds the problem, I am pretty certain I won’t do anything and just feel ashamed I have not done as I was told and reduced enough, supposedly 3mg by March. I have the wrong mindset to challenge those in authority.
I really appreciate you taking the time to read what I say and replying to me it helps when I write it down. I will go on our surgery’s e consult and try for an appointment. That was how I was originally diagnosed, after which I had a face to face appointment with the GP.
I'm not saying "challenge those in authority" but YOU have to advocate for yourself when the medical treatment you are being given is making you worse not better, If you don't make it clear to them, they can't know. If you are taken off MTX your physical and mental health will improve - and you would be less of a burden to both yourself and to them!
Your illness is maybe not life-threatening - but we would all say it is is life-changing and it is the judicious use of medication that makes life worth living. As for older patients not being important in the great scheme of things - I think we have all earned a bit of decent respect and they have plenty to learn from us even in retirement. This forum and several research results in PMR stem from ladies in their later years
As for me taking the time to read why you say - it is what I do, it is why I spend my days here, like DorsetLady. We read every post and reply when we feel we need to. The purpose of the forum is to make things better for others and we have learned an awful lot we need to pass on to save others ploughing through the morass that PMR/GCA care can be. We are worth it - and so are you.
You're not even 70! If you were the Queen, you would still have nearly 30 years to go! Don't feel embarrassed about asking to stop a drug that is making you ill, and not helping. That is what the medics themselves would do, and they may even think it strange if you don't!
Do you have a rheumatology helpline where you could ask about stopping MTX? The GP might not feel able to as it is prescribed by the specialist, and will have to write, which might make it take longer.
The others are right, suelm. You have as much right as anyone to have some quality of life. You have explained very well to the group here and none of us would consider your tone challenging in the slightest.
I’m not by any means trying to push you into something you are uncomfortable with but sleep on it and have another think tomorrow. If you do decide to speak out, look again at what you’ve told us, write down a list of those points and read them off the list. There is no pressure here- just a lot of caring. 😇
Sorry to hear your feeling bad, I'm currently on 6mg prednisolone and up to 12.5MTX, there isn't a day go by where I'm coping with one type of pain or another, I think that goes for us all on here. I'm only on week 3 of MTX and have been left in the breeze by the nurses strike cancelling my appointment. I'm not coming any further off Pred at this time despite what the consultant says. They are not experiencing my fatigue and pain day to day and all the crap that goes with it. After 12 months of being on pred meds and then having them quickly taken away without the time to reduce, I'm doing this Pred reduction nice and slow in my own time, I just have to be down to 3mg for May when I go see the consultant when she is then going to investigate further as to my varying incapacity to walk. My advice is slowly slowly as I have had to learn the hard way, and has been said to me many times on this site.
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